Tough Like Teddy

CARTERVILLE, Ill. (KFVS) - To see 5-year-old Teddy Sambursky now - running, jumping and playing with his sisters and brother - you would never guess that little more than a month ago he was in the pediatric intensive care unit at St. Louis Children’s hospital clinging to life.

“Quite literally, I didn’t know if he was going to die in my arms,” said Teddy’s father, Joel Sambursky.

Teddy’s journey began five and a half years ago. Samantha and Joel Sambursky were expecting their fourth child. Samantha Sambursky said a concerning heart arrhythmia at a routine checkup prompted doctors to perform an emergency c-section.

As a result, Teddy was born seven weeks early. He spent weeks in the neonatal intensive care unit at St. Louis Children’s Hospital.

“He jumped through those premature hurdles fairly well, and at one month old we were transferred back to Carbondale hospital,” said Samantha Sambursky. “We were supposed to be just a few days away to a week from coming home permanently. That same day he was transferred to Carbondale he started showing signs that he was struggling, and by that night we were transferred back to St. Louis.”

Doctors ran every test imaginable to find out what caused a thriving infant to take a sudden turn for the worse. The answer was a rare and dangerous form of bacterial meningitis.

“I remember they kind of pulled us aside to tell us that this has devastating effects,” said Samantha Sambursky. “For whatever reason those words have stuck in my head all these years.”

The infection inside Teddy’s brain caused a range of problems.

“Everything from seizures to brain surgeries to sedation and coma, intubated with breathing tubes and IVs everywhere,” said Samantha Sambursky. “It was very touch-and-go for quite a while. At one point we saw an MRI of his brain and about one-third of it had been impacted by the meningitis from what we could tell. At that time he was just a little baby. He was only a month old. The long term outcome we didn’t know.”

Teddy spent more than 100 days in the hospital prompting a public awareness campaign that came to be known as “Tough Like Teddy.” Several college football teams rallied to show Joel Sambursky, a former SIU quarterback and Saluki Hall of Fame member, and his family that they were not alone in their fight.

Community members followed suit, holding events to raise awareness and offer support to the smallest Sambursky.

“Sometimes life brings you a load that you just need help with,” said Southeast Missouri State University Head Football Coach Tom “Tuke” Matukewicz at SEMO’s “Tough Like Teddy” 100 yard carry event in 2017. “That’s why you gotta have community, where you can come alongside somebody and pick ‘em up and carry them.”

Tough Like Teddy: showing support for the Sambursky family

After many more complications, Teddy was finally able to come home, but he wasn’t home free. At nine months old, he suffered infantile spasms, a very serious form of epileptic seizure caused by brain injury or illness. It was another terrible setback for tiny Teddy.

“That was pretty devastating,” said Samantha Sambursky. “It was a very difficult time and a different very difficult type of epilepsy that we had to work through.”

But the Samburskys say once Teddy reached 15 months or so, things seemed to level out. Teddy defied the odds and began developing like any other toddler. Then, he grew into a healthy, happy, active little boy.

“He’s just gotten to be a little boy for the last four years, which has just been wonderful,” said Samantha Sambursky. “So yeah, I think I’d say this totally caught us off guard.”

On October 15, Teddy and his family were in Du Quoin at his older sister’s cross country meet when something the Samburskys thought to be unthinkable, happened.

“I looked over at Teddy and I saw his eyes roll up and his body kind of contort and just knew instantly, that it was a seizure,” said Joel Sambursky.

Panicked, the Samburskys ran for help, and counted the minutes as they waited for EMTs to arrive.

“I remember saying, ‘where’s the EMT,’” said Joel Sambursky. “‘En route, en route,’ someone said, and we had someone else counting the time, and they said ‘We’re at 13 minutes.’ and someone else said ‘I know that feels like a long time when it’s your kid.’ But I remember thinking when Teddy was having seizures initially as a baby they told us if a seizure is longer than 5 minutes - bring him in - so 13 minutes doesn’t just feel like a long time, it is a long time.”

His parents say Teddy’s seizure lasted between 30 and 40 minutes only ending when emergency room doctors in Du Quoin sedated him for another life flight to St. Louis.

“I was at a baseball tournament, so I was actually in St. Louis at the time and didn’t know what was going on,” said Teddy’s older brother Jase Sambursky. “It was 15 or 30 minutes later when my coach told me my brother had had a seizure. I was really scared because I didn’t know what was going to happen to him. He could be really hurt and I wouldn’t know. All I knew is that he had a seizure.”

But, in truth, no one knew how such a long seizure would affect Teddy. Teddy’s long-time physician, Washington University Pediatric Epileptologist Dr. John Zemple of St. Louis Children’s Hospital said it’s not necessarily the seizure itself that’s the concern, but the complications that can come along with it.

“They can often if not realized or treated well result in not breathing well which can be very damaging to the brain after just a few minutes,” said Dr. Zempel. “The first several days during his intensive care stay - we never know how somebody is going to recover. And that reflects that we don’t truly know how long the seizure might have been going on and how long it took to stop.”

At some point in the seizure fluid got into Teddy’s lungs, and that was a very concerning complication.

“The first couple of days it was, was he going to survive the pneumonia, and all the fluids and stuff he was dealing with in his lungs” said Joel Sambursky. “Then after he got stable, it became, were we ever going to be able to have conversations with him, was he going to be able to walk, was he going to be able to function like the Teddy we’ve grown to know, because as they were able to wean him off the oxygen and he was coming off the sedation there were a couple days where there just didn’t feel like there was a lot cognitively going on.”

The Samburskys waited at Teddy’s bedside and prayed for him to recover. Then, quite suddenly, Teddy showed just how tough he really is.

“He started to cry a little bit and we asked him if his throat was hurting and he said ‘yes’ and that was the greatest thing ever because we felt ‘this is good - this is really good,’” said Joel Sambursky. “Then a few hours later he started to wake up again and he cried out for mom.”

That small, three-letter word had a huge implication for the Samburskys, that Teddy would overcome this too.

“He continues to face these challenges with a smile on his face and he’s winning. He’s defying the odds and as a dad I’m just in awe of what he’s been able to do,” said Joel Sambursky.

Doctor Zempel said when he first saw him early in life, medically he would not have predicted Teddy would be as active as he is, and live the full life he does. But the doctor admits children and their ability to overcome and heal constantly surprise him.

“I think Teddy’s outcome is a testament to the care of his family, school and community in supporting him through all of these very significant medical challenges,” said Dr. Zempel. “There’s been wonderful research that even when you have a very significant brain injury at a young age that many patients have relatively good outcomes despite these very significant early setbacks and that the role of family environment and school is so important in long term outcome.”

Teddy is now back at home, back and school, and back to running wild. Like the football players who tried to be “Tough Like Teddy” years ago, Teddy is now celebrating life – by doing touchdown “griddies” in his front yard.

“I feel like there’s been a lot of grace that has gone into getting us to this point and a lot of work and a lot of love and a lot of support from everybody,” said Samantha Sambursky. “Having been through everything we’ve been through I don’t throw around the word miracle lightly but he really has overcome some incredible odds.”

Dr. Zempel believes it was a virus that caused Teddy’s seizure. What would amount to no more than a tiny cold for most people was enough to lower Teddy’s threshold and trigger it. Now, Teddy’s on medication to keep it from happening again.

November is Epilepsy Awareness Month, designed to draw attention to one of the most common, yet least understood, of all neurological disorders.

Dr. Zempel and the Samburskys want everyone to know what to do if someone is having a seizure. Here are some tips:

Make sure the person having a seizure is in a safe place. Roll them onto their side on the floor, on a couch or bed and make sure they cannot fall or hit anything and injure themselves.
Look at a clock and time the seizure. If a seizure lasts more than five minutes - call 911. Or, if the person having a seizure appears to have difficulty breathing, call 911.
Do not put anything in the person’s mouth. Dr. Zempel said it’s an old wive’s tale that a person having a seizure could swallow or choke on their tongue and putting something in their mouth presents a choking or injury hazard.

Dr. Zempel said people with controlled epilepsy can live very full lives. He said many of his early childhood patients have grown up and gone to college, gotten married and had a wonderful quality of life. He believes Teddy may be one of them.

“I’m always happily surprised at how well many patients do despite some really significant early challenges,” said Dr. Zempel. “It just tells us that no one’s story is written right from the beginning, that there are many, many things that can change and with the help of a great family and great school environment - so many obstacles can be surmounted.”